My mother is full of fun

My mother forgets things. A pot on the boil. A tap left running. A previously familiar telephone number, gone.

My mother is lighter in mood, less inhibited, full of fun. I was upsetting her by lacing our time together with sadness.

“Old people can be a bit forgetful”; “I once left a tap running too”; “I can never remember my own number”; “All this doesn’t necessarily mean anything” … These have been familiar stops on the journey from denial to the realisation that mum has joined the 7 million people across this continent who suffer from dementia.

The lack of real support – practical and emotional – for our family has been staggering. Nobody will tell you what to expect, or help you develop the psychological tools for coping. I understand fully that each patient is different, and each patient-carer relationship equally unique. But, surely, some of the features of loved ones’ reactions to it are common.

It was vital for me to recognize that Alzheimer’s (the underlying cause in Mum’s case), debilitating and horrible as it is, also brings moments of catharsis, laughter and joy. The key was the realization that the source of my overwhelming sadness had little to do with her. It stemmed from either my comparisons with the past, my anxieties about the future, or my fear over my own eventual frailty.

The result was that I was missing being in the present, and upsetting her by lacing our time together with regret and sadness. I was treating her as already incapacitated, not truly being with her even though we were in the same room.

She would talk to me, but all I could hear were my own questions: where is the woman I knew so well? What happens next? But when I managed to switch off this destructive internal dialogue and be with her in the “now” (which is what people with difficulty in forming short-term memories do a lot of the time), we actually had a blast.

We love our children unconditionally – regardless of their ability at a particular age, or their relative lack of complex cognitive ability, memories and experience. We recognize the gift that is their near-Buddhist ability to exist in the moment. Why not our parents?

Is it odd to claim that, as difficult as the situation is, it also has significant compensations? I feel I am getting to know my mother as she would have been when she was 12. I even caught her drinking juice straight out of the carton the other day! She is lighter in mood, less inhibited, full of fun.

Having had to nurse my father through terminal cancer does not weigh on her in the same way it did two years ago. Like a sharp rock smoothed to a pebble, the detail and the emotional memory of it have faded.

The stories she keeps endlessly retelling me are the ones she wants me never to forget. That is my homework. She goes around the house endlessly looking at photo albums, jewellery boxes and holiday souvenirs, retracing her connection to them. She tells me about it. “Your father bought me these earrings in Venice”, she gloats. She is a woman compensating for slowly losing her sight, by feeling the features of her past. That is her homework.

It is vital to listen, be it for the second, fifth, fiftieth time. The veracity of these stories is irrelevant. They contain clues. During moments of confusion, when she forgets someone familiar, I discovered that using her stories, her photographs, her mementos, was the quickest and least traumatic way to restore her.

“You remember Anna. You know those earrings you were showing me? Anna and her husband were with you on that trip to Venice.” The pilot light is back on. Her synapses fire. A crisis is averted.

This connection to a familiar environment and cherished objects was the key factor in my sisters’ and my decision to hire live-in care, rather than consider a nursing home. One of us is also always with her – we take turns. This is not to criticize other people’s choices; they are unique to their circumstances and the nature of the symptoms.

This is precisely why the debate on carers is important, and why cuts to elderly support can be devastating. The lately fashionable focus on the economic worth of carers’ contribution, while helpful in emphasizing its value to the economy and the state, can be deeply unhelpful.

As much as governments would like us to be fully evolved homines economici, we are not. These are deeply personal decisions made after consultation with both mind and heart. The state, through access to diverse, tailored care options and quality advice, needs to support those decisions. It is as simple as that.

And it is equally important to remember the charities that are doing vital work in this area – and that are suffering during these austere times. Only this week, Alzheimer’s Research UK has publicized a breakthrough piece of work exploring the link between infections and the disease’s progression. Momentum is vital to scientific research – a lack of funding affects it for a disproportionate period, as neurologists choose different fields in which to work and knowledge is lost.

My mother forgets things. A pot on the boil. A tap left running. The time will come when she will forget me. But she remembers me for now and our relationship is as sweet, generous and instructive as it has ever been.

Originally published as The Consolations of Alzheimer’s. Copyright Guardian News & Media Ltd. 2013